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What's Up With My Symptoms Getting Worse?


gluten Tag

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gluten Tag Rookie

I have been gluten-free for about a month. Mentally Im feeling much better. In addition, no aches and pains and sleeping better. But my DH has become worse and my occasional mouth ulcers are here with a vengence. What the heck? :o

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ravenwoodglass Mentor

Have you checked all your toiletries? Shampoos, lotions, makeup, lip sticks and balms etc can all provide enough gluten for a reaction.

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dilettantesteph Collaborator

It seems to be pretty typical to get more sensitive to smaller amounts of gluten after you go off it. You need to check carefully for sources of gluten to eliminate.

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gluten Tag Rookie

I feel like I've checked everything very closely. It's feeling very discouraging.

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dilettantesteph Collaborator

I think we need more details about what you use to be able to help you. For instance there are a lot of "gluten free" foods that have marked on the label that they are processed in facilities that also process wheat. Most of those make me and my celiac son sick. They get contaminated by incompletely cleaned machinery or just by gluten containing dust in the air. There are medications and vitamins that contain gluten. Have you eliminated oats? Some celiacs react to even gluten free oats. What brand of gluten free flour do you use? Some celiacs react to grain alcohol and some wine.

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ravenwoodglass Mentor

In addition to the stuff already mentioned do you use Iodized salt? If you do stop until after you lesions have been gone for a while. The iodine also activates DH lesions and it takes a while for the antibodies to leave the skin.

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ang1e0251 Contributor

Don't forget toothpaste. Have you been around any remodeling like drywall or wallpapering? Do you work any crafts or art projects? Sometimes things we don't even think about have gluten. I had the worst reaction I've since going gluten-free this summer after having 2 packets of stevia. Stevia is a sweetener that doesn't have gluten but I stupidly didn't check the packet. It was laced with wheat flour!

Could you be getting CC'd? At home it can happen easily. That was another dumb mistake I made. I guess I've been my own worst enemy. Look out for yourself!

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  • 3 weeks later...
Emily888 Rookie

Are you taking any medication? Medications and OTC drugs can have fillers that have gluten.

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      Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage. I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this.  When in pain before I was seen by a number of gynacologists as I had 22 fibroids and had an operation 13 years ago to shrink them . However the pain remained and intensified to the point over the years where I began passing out. I was in and out of a&e during covid when waiting rooms where empty. My present diet is the only thing that's given me any hope for the future. As I say I had never heard of celiac disease before starting so I guess had this not come up in a conversation I would just have carried on. It was the swollen lymph node that sent me to a boots pharmacist who immediately sent me to a&e where a Dr asked questions prescribed antibiotics and then back to my GP. I'm now waiting for my hospital appointment . Hope this answers your question. I found out more about the disease because I googled something I wouldn't normally do, it did shed light on the disease but I also read some things that this disease can do. On good days I actually hope I haven't got this but on further investigation my mother's side of the family all Celtic have had various problems 're stomach pain my poor grandmother cried in pain as did her sister whilst two of her brother's survived WW2 but died from ulcers put down to stress of fighting.  Wishing you well with your recovery.  Many thanks  
    • knitty kitty
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    • BluegrassCeliac
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    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
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